Only After They Were Gone ~ My Thoughts on Physician Assisted Death
I recently listened to Diane Rehm’s documentary When My Time Comes. It presents a concise review of the issues and varying viewpoints on the topic of Physician Assisted Death (PAD), also called Medical Aid in Dying, Physician Assisted Suicide and Physician Aid in Dying.1 Admittedly, Diane has been a proponent of PAD since the death of her husband who had Parkinson’s Disease and requested it, but it was not legal in Maryland.
What exactly is Physician Assisted Death? It "refers to the practice where a physician provides a potentially lethal medication to a terminally ill, suffering patient at his request that he can take (or not) at a time of his own choosing to end his life." 2
Oregon was the first state to pass a Death with Dignity Act in 1997 making PAD legal and similar laws have been debated and slowly adopted by other states. In 2017, death with dignity bills introduced in 25 states failed. As of April 2021, however, nine states and the District of Columbia have passed a Death with Dignity Statute: California, Colorado, Hawaii, Maine, New Jersey, New Mexico, Oregon, Vermont, and Washington. Montana does not have a specific statute, but there are no laws prohibiting PAD. In my own State of Rhode Island, The Lila Manfield Sapinsley Compassionate Care Act, H5572 was introduced in February 2021 and is being reviewed in committee. There are 12 other states currently considering similar death with dignity bills.3
States that allow PAD all vary in what their statutes legally require. However, to guide physician clinical practice, Compassion and Choices, a nonprofit with the goal of improving end of life care, convened a committee of experts to develop Physician Aid-in-Dying Clinical Criteria.4 In general, these clinical guidelines state that patients must have a terminal illness (death is expected in 6 months or even less), are residents of a state allowing PAD, and have the decision-making capacity for an informed and voluntary request. The physician should assess for the source of any suffering which may be physical, psychological, spiritual, financial, or existential and whether or not it has been optimally addressed. Other considerations include determining if the individual is aware of additional options such hospice or palliative care for symptom management. Have they considered stopping any life prolonging treatments, if applicable? Would palliative sedation, or voluntarily stopping eating and drinking (VSED) be alternative options? If severe depression is suspected, then further evaluation by a psychiatrist or clinical psychologist would be important. Getting a second opinion, preferably with someone who has palliative care experience, is highly recommended. Requiring time between requesting the prescriptions and receiving them can help to substantiate the request over time. Patients also need to be capable of taking the medications on their own. Documentation should substantiate that patients understand their diagnosis, prognosis, and available treatment options, that the requested medication will cause death, and that they can decide at any point not to use it. The physician should reaffirm that he/she will remain involved either way.
After watching Diane's documentary, I had a delayed reaction before fully acknowledging how close to home this topic really was. I tend to keep the pain of my own parents’ stories tucked away, because the private suffering that these stories imply is hard to revisit. Over thirty years ago, my father was diagnosed with head and neck cancer shortly after retiring as a chemical engineer. He underwent a laryngectomy, had radiation treatments, a second surgery for recurrence resulting in removal of part of his tongue, and then chemotherapy, all of which controlled his life for four years. It was distressing to see him deal with significant and poorly managed pain, require tube feedings along the way, and use an electrolarynx for communication. At the beginning, he was resilient both physically and emotionally. He continued to get together with friends and family and keep his (Irish) wits about him along with his sense of humor.
The last year of his life, however, took him down to the studs. He required several hospitalizations, and it was becoming clear that he was declining despite ongoing treatment. Being a wise and practical man, he knew what was happening, but he never openly discussed it. He returned home from his last admission essentially bedridden, and it became clear he had been “sent home to die” albeit with little to no ongoing medical support and hospices were just getting established. As he came into the house, looking confused and panicked, he rallied and appeared to be searching for something and indicated he did NOT want any help. Given the intensity of his pain, his weakness, as well as his challenges with communication and swallowing, it was an ongoing effort to try and keep him comfortable. Looking back, I believe that his pain kept him tethered here and it was not until he was finally started on an opiate that he was able to relax enough to let go and die.
Following his death, we found out that he had been considering an exit plan of his own. In his bedside table there was a sign he had written to post on the door that said "stay out of the basement (with a gas stove) and call the fire department" along with a note to the family. Had he started this plan and been interrupted? Was it there for back-up if things got worse? By the time he was discharged home for the last time, he was too weak to have acted on it. Were these papers what he was looking for that day because he did not want his family to know what he had contemplated? Whether it was fear of pain, dying, dependency, issues of burdening the family or something else that led him to consider taking his own life, we will never know. As a Catholic, it must have been a conflicted and soul-searching process given that his faith views suicide as a sin. How tragic that he experienced this angst alone.
Throughout his illness, my mother carried on, “needs must” as the British say. We later learned the toll it had taken. She continued to live in our family home for another 20 years. My father always said that "the only way your mother will ever leave this house is toes first". He was almost right. It was just 6 weeks from the time she collapsed, was transferred to the hospital, diagnosed with 3 brain tumors, declined any further work-up, received hospice care in the nursing home, and died. During those weeks, she would not discuss what was happening. "We are not going there", was her response when I asked about any wishes, fears, or worries. Was it surprising, that after experiencing the end of her husband’s life, we found an enormous stash of anxiolytics (benzodiazepines for anxiety) in her home after her death? She had been hoarding pills and there were at least 100 in her cedar chest on the second floor and a similar amount in a bedside table on the first floor. She had covered her options. Prior to her collapse she had exhibited only subtle symptoms, but I think she knew something was very wrong, but said not a word. She kept her daughters at arm’s length and declined visits. When she landed in the hospital, she was angry, and finding those pills provided a clue. She had planned to end her life on her own terms and in her own home. Now like her husband, she had lost the opportunity to act on it. She never shared her concerns about dying and it must have taken years for her to accrue all those pills.
In Oregon after 20 years since passing the law allowing PAD, about one third of the people who actually received the prescriptions did not use them. Data from 2019 revealed that for those patients who took the prescriptions, the median age was 74, the most common terminal diagnosis was cancer and 90% died at home with hospice in place. The most common reasons cited were loss of autonomy (87%), loss of dignity (78%), and decreased ability to participate in activities that made life enjoyable (90%) – all quality-of-life issues.5 Interestingly, physical pain was not cited as a primary reason.
The American Medical Association does not support Physician Assisted Suicide (they say call it what it is), but it leaves the door open for physicians to act in accordance with their conscience and ethical obligations regarding whether to participate or not. 6,7
The AMA further states that physicians:
Should not abandon a patient once it is determined that cure is impossible.
Must respect patient autonomy.
Must provide good communication and emotional support.
Must provide appropriate comfort care and adequate pain control
The American Nurses Association 2019 position statement is neither in opposition to or in support of Medical Aid in Dying, but states that nurses should be informed about the issue, remain objective when discussing end of life options with patients and be aware of the affect that their own values may have on the nurse-patient relationship. A nurse may consciously object to being involved in the actual process. However, “the delivery of high-quality, compassionate, holistic and patient-centered care, including end-of-life care, is central to nursing practice. Hallmarks of end-of-life care include respect for patient self-determination, nonjudgmental support for patients’ end-of-life preferences and values, and prevention and alleviation of suffering”.8
The position statement of the Hospice and Palliative Nursing Association is clear that PAD is not part of palliative care which neither seeks to hasten nor postpone death. It further states that PAD is not within the scope of practice for hospice and palliative care nurses. Nurses do need to be informed about the applicable laws and ethical principles. They also should assess for untreated suffering and advocate for quality palliative and hospice care for their patients.9
Several issues add to the ongoing debate on PAD. For one, there are currently no FDA approved drugs for PAD. Prior to 2015, the barbituates pentobarbitol or secobarbitol, were the drugs of choice. Then pentobarbitol was no longer available from Europe while the cost of secobarbitol increased from about $300 to over $3500 for a lethal dose.10 This has led to some trial and error in the effort to find effective drug cocktails using varying mixtures of chloral hydrate, phenobarbital, morphine, diazepam, propranolol, and digoxin. Laws from state to state are inconsistent. Most religious groups do not support PAD which can contribute to a sense of secrecy and guilt for someone suffering enough to consider it. In addition, there is a limited amount of research to help guide practice and to evaluate the impact of PAD.
When a seriously ill person begins to consider PAD or their own exit plan, this is an indication of profound suffering. At least for those who request PAD, there is an opportunity to assess their reasons, and offer supportive counseling to (urgently) address any contributing concerns or issues which aligns with the clinical guidelines and professional position statements listed above. What about the person who decides to quietly and privately make his or her own exit plan? This clearly highlights the need to assess all patients dealing with a serious illness for sources of suffering. Sitting down and opening the door to these vital conversations is the beginning. Simply asking, “Are you at peace?”, can be the invitation to share .
The taboo and secrecy around discussing death and dying has a firm hold in our culture. We have become experts at avoiding our mortality……clearly the biggest, fattest elephant you ever saw in a room. Normalizing conversations around the end of life can happen and palliative care providers are skilled in techniques to initiate and facilitate them. Opportunities for this communication should be offered and incorporated into quality healthcare, especially in the context of a life-threatening disease. If information is power, then more people need to understand what typically happens at the end of life, what range of options they may have for their care, and that they should never be left with the words “there is nothing more that we can do”. It is important to elicit any misconceptions and provide accurate information and reliable resources. Being ill can foster a sense of vulnerability and having a team of advocates who will find out what matters most and then prioritize that into the plan of care should be the goal. Suffering comes in many forms and skilled symptom management has been shown to relieve most common physical symptoms experienced with an advanced disease. Additional issues of anxiety, depression, loneliness, and other psychosocial and spiritual distress should be addressed by all the appropriate specialists. In rare circumstances, however, some suffering does not respond to treatment. Rather than suffering in silence, hoarding pills or turning on the gas, we need to acknowledge that life is fragile and start talking about it and not just when our time is running out.
To summarize what Diane Rehm said at a Maryland legislative hearing, whether you believe that only God can decide when you should die, or if you want all medical options available, or if you chose to end your suffering at a time you chose, "I support you all 100 percent". This theme is reflected in the ANA’s position statement as well and I agree with their recommendations for a compassionate and nonjudgmental approach to requests for PAD. Maybe with more and earlier conversations and support for those who are seriously ill there would be fewer requests or need for PAD. Being better prepared can contribute to a sense of control, reduce anxiety, and help to prevent unnecessary suffering. The stories of both of my parents illustrate how the fear of dying can augment suffering and lead to less than optimal “home made” plans to end ones’ life. Their stories also provide a powerful motivation for me to continue my work towards improving care at the end of life.
1. https://weta.org/watch/shows/when-my-time-comes
2. https://www.thehastingscenter.org/briefingbook/physician-assisted-death/
3. https://deathwithdignity.org/in-your-state/
4. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4779271/
5. https://deathwithdignity.org/oregon-death-with-dignity-act-annual-reports/
6. https://compassionandchoices.org/resource/new-ama-position-on-medical-aid-in-dying/
7. https://www.ama-assn.org/delivering-care/ethics/physician-assisted-suicide
10. https://euthanasia.procon.org/questions/how-much-do-physician-assisted-suicide-drugs-cost/